2 BIG Updates!!!

It has been a long time coming, but we are back!

Back in the blogging world.

Back to sharing our story in order that God may be glorified!

In reality, we never actually stopped sharing - some of you probably follow Samuel's page on Facebook or Instagram and have kept up with us through those platforms - but I know many of you relied on this blog, and I am so sorry that I have left y'all hanging for so long!

The truth is, this journey is draining.  Some days it takes everything I have just to make it through all of Samuel's daily routine (respiratory treatments, sterilizing equipment, PT/OT/Speech therapy sessions, meds, blending his food, etc...), and then throw in a phone call or two with insurance, doctors, and/or his medical suppliers...It often leaves me feeling like I don't have much left to give.  So I stepped away from those things that weren't a necessity.  But writing has always been therapeutic to me, and my hope was to get back into it at some point; but at the same time, it just felt so daunting every time I thought about sitting down to write.
I have missed it, and I am glad to be back!  Hopefully I will find the capacity to continue regular updates here - that is my goal!

However, If you would like to follow along on Facebook, where you can catch up on what has happened in the past year and see more frequent posts, you can search for Samuel's page called "His Story, His Glory - Samuel David's Journey".
Or click on this direct link and click the "like" button:
https://www.facebook.com/hisstoryhisglory/

Or on Instagram you can search @HisStoryHisGlory

Now for some updates!
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Two BIG NEWS items:

FIRST, we are back in Delaware!

Back in October Samuel had a routine echo that was more concerning than any of his previous echos since being discharged. By December, his cardiology team in Delaware had decided that it would be best for us to travel to DuPont so Samuel could undergo a cardiac catheterization, which would give them a more precise picture of the current state of his heart. Based on the results of the cath, they may then determine to go ahead with Samuel's next open heart surgery.

Just last week we finally got a call with finalized dates. So we frantically spent the next few days getting things in order and packing before hitting the road for a 20-hour road trip! God brought us safely to Delaware just last night, and we will spend today relaxing with a priority of letting Samuel rest so his body can recover from the trip.

Tomorrow, the 17th, at 11 Eastern time, Samuel will have his cath; and then surgery is scheduled for next Friday, the 24th. He also has several appointments scheduled with some of his specialists during the in-between week. We will likely be in Delaware for about a month, if Samuel's recovery goes well.

We are praying that Samuel will recover well from both of these things with no complications, that we will all remain healthy so nothing is delayed, and that God will give us and the doctors wisdom as big decisions are made over the next week.

The SECOND BIG NEWS item...

God had blessed us with another precious child to love!!! And we are so excited to watch Samuel grow into the roll of big brother.

Praises abound, as this was my first pregnancy (out of four) where I had no complications in the first trimester! Although "morning" sickness this time around was much more severe than I have experienced before. But I am starting to feel much better, and we are grateful to already be in the second trimester! Lord willing, we will have another baby in our arms come July.

What we know...

Is that God's timing is perfect! He has ordained this little one to join our family at this exact time, and we know that was no accident! Even though things may seem somewhat daunting with Samuel's current medical needs, we know that God is working out the timing of each situation perfectly, and we will continue to trust Him.

By the time we get back to Arkansas, it will probably be about time for our anatomy scan, which is when we will find out so much more about this sweet new baby - whether or not he or she shares Samuel's diagnosis. But regardless of any diagnosis, we know that God is perfectly creating this little one in His image, for His glory! And there is nothing else we could ever hope for.

After all, this is His story, and it is all for His glory!

Thank you for continuing to keep our family in your prayers! God continues to faithfully lead us, and the prayer support we feel is such a huge encouragement!

The Big ONE!!!

One.

Year.

Old.

I'm not quite sure where the time went, but I am thankful for every single day - all 365 of them!

Early in the morning on February 27th, 2018 - after 29 days of full bed rest, 17 days of being in the hospital, 11 days of waiting since my water had broken, and roughly 9 hours of true labor - Samuel David was born.  He was 6 weeks early, weighing in at 4 lbs. 13 oz. and 17.5 inches long - we were all amazed by how BIG he was for being so early, as the ultrasound just 4 days earlier had estimated him at 3.5 lbs.
He came into this world without making a sound - no crying was heard.  I didn't get to touch him.  I hardly even saw him as the doctor quickly lifted him up at the end of the bed for me to get a look, and in the same motion placed him in the arms of a nurse who immediately turned and hurried out of the room - an entourage of people following.  Seth leaned in to praise me, encourage me, offer words of hope in that moment...and I quickly pushed him away - reminding him that we had firmly decided beforehand that he would stay with Samuel the whole time, and he was already out of the room.

Samuel David made his appearance at 3:35 a.m., and before the clock turned to 3:37 I was left all alone in that delivery room.  The team of about 15 doctors, nurses, and respiratory therapists had all disappeared.  Seth had rushed out (at my urging) to chase after our son.  And I was left with the memories of that one quick glance.  To be honest, all I could remember was how much dark hair he had!  I wasn't able to get a good look at his face, it all happened so quick.

Each moment that followed was filled with heartache and joy, existing hand-in-hand.  My heart was aching to hold my son and love on him, but I was filled with joy that he was finally here - that this stage of the journey had begun - and I knew that if he were to be placed in my arms too soon, it would be to say "goodbye"...So as each minute ticked by I tucked the longings of my heart further and further away, allowing them to be replaced with hope.  Each minute that ticked by brought new hope, as it was one more minute that the medical team must have thought that Samuel could be helped - that just maybe he was compatible with life after all.

You see, if in their initial assessment they didn't think they could save him - his lungs too small, body too frail, heart too complex, causing him not to respond well to initial interventions - the plan was for them to rush Samuel back to me as quickly as possible so that we could spend some moments as a family while he was still here with us.  But, if intervention was working...If he was able to breathe on his own long enough for them to get him intubated.  If he could keep his sats up after intubation.  If he responded well to the prostoglandins.  If....
There were so many "ifs".  But I knew with each passing second that he must be checking off those boxes, because otherwise he would be back in my arms - for the last time.
So as the ache in my heart intensified, hope grew alongside of it.

30 minutes later (which seemed like so much longer) Seth texted me a pictures of Samuel:

A picture that broke my heart and melted it all at the same time.  He looked so helpless, yet he was here, and he was alive!  I stared at that picture for the next 3 hours as I waited for them to finish stabilizing Samuel and preparing him for transport to Arkansas Children's Hospital, 5 minutes down the road.

My mom arrived at 6, so I was finally not alone.  Then, just after 6:30, Seth walked in with an incubator following close behind.  We were able to spend 2 minutes with our sweet son by my bedside.  They opened the side of the incubator, and I was able to stick my hand in to touch his tiny fingers.

My heart continued to simultaneously break and melt.  I knew they would be taking him away at any moment, and I was desperate to be discharged as quickly as possible so I could be with my little family.  I was thankful that Seth would be able to stay with him the entire time.

A little over 12 hours - and a million texts back and forth with Seth - later, I was discharged and finally able to head to the children's hospital so we could be reunited as a family.

It was late.  We were exhausted.  But we were together.  And there was hope of living another day with our son.  Although we weren't able to touch him much that night, I did get to place my hand on his head, feel his soft hair, and just let him know that we were there.  Although it would be another 3 days before I was allowed to hold Samuel for the first time, and although those moments would be few and far between over the first 4 months of his life, we learned to cherish every little detail of every little moment - and the joy God allowed us to find in each of those moments carried us through.

Around midnight we decided that we should probably leave to get some rest, and that was the hardest thing I had ever done up to that point.  We would BOTH be leaving him this time.  And it was heartbreaking.  In the coming days, weeks, and months we became very accustomed to this routine (although it never got easy).  There were some nights that we pulled shifts staying bedside, but we weren't allowed to sleep in the units so it wasn't sustainable.  We spent February through the first part of September leaving our son late every night, and getting up early each morning to head straight back to the hospital.  In September, when Samuel was finally moved out of an ICU for the first time and put in a private room, we were beyond thrilled to finally be able to stay with our son 24/7 - no longer having to say "goodbye" and wonder how he was doing throughout the night.

One year later the heartache of all of these moments seems so far in the past.  We are so grateful for all of the "firsts" that God has graciously allowed us to celebrate over this past year!

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I know many of y'all followed our blog or found Samuel's story on Facebook from the very beginning (you can find his Facebook page by searching "His Story, His Glory - Samuel David's Journey" on Facebook), but some were not here during those first days.  No matter when you joined our journey, know that we are so grateful for each of you for rallying around us and praying us through the hardest days of our lives!

Some time in the next week I hope to post a recap of Samuel David's eventful first year of life!

One year into this part of our journey, and we still boldly proclaim that....

...this is His story, and it is ALL for His glory!

Life at Home

Maybe you've guessed it by now, from the fact that I haven't posted in over 7 weeks...but life at home is busy!

Getting on a schedule.
Learning new routines.
Keeping up with all of Samuel's cares.
Making sure prescriptions are filled.
Fighting hard to get all of the necessary medical supplies approved by insurance.
Maintaining/sanitizing all of Samuel's equipment.
Dealing with insurance and government offices.
Advocating for our son.
Making sure doctors are collaborating.
Finding new doctors and coordinating appointments.
Having OT, PT, and speech therapies.
Going to doctors appointments.
Loving on Samuel.
Keeping house.
The list could go on...

It is pretty non-stop around here, and sometimes we feel like we're running a hospital, but (as you've also probably guessed) we wouldn't have it any other way!

We are beyond thankful. God has taught us so much in each season that we've walked through, and being home is just one more season of learning.

One of the hardest parts about this season? We are pretty much confined to our house. Our biggest priority is keeping Samuel healthy, and we came home right around the time of year that sickness begins to run rampant! So in order to protect Samuel from a "common" sickness that would likely put him back in the hospital 3 hours from home...he only gets out of the house for his doctors appointments, occasional strolls up and down our little street when the weather is nice, and twice now we have ventured next door to the grandparents' house (but only after thorough screenings to make sure there was no sickness!).
But we can't complain too much about not getting Samuel out of the house often, because it is no easy task! If you think getting an average baby packed up and out the door for an outing is time consuming, try doing it with all of Samuel's equipment! Although we are getting faster and more efficient, it is a process - making sure we have all of the necessary emergency items, medical equipment, and typical baby stuff. We are so thankful for our double stroller, because all of the necessary items would not fit in a regular stroller!

Our first-ever outpatient appointment!
The double stroller is fully loaded with Samuel's ventilator, pulse ox machine, suction machine, 2 oxygen tanks, emergency trach bag, medical binder...and, oh yeah, the actual diaper bag with typical baby stuff is on my back. Not to mention, Samuel is in there somewhere! Sometimes it's hard to remember little things like diapers when you're in the middle of making sure you have all of the life-saving equipment packed!
But Samuel is a baby, too 💙

Church? For now, must be done from our living room. We are so thankful that our church does a live audio stream of their service so we are able to join in! But it is hard missing out on the fellowship. We are blessed to have a church family that has rallied around us even in our absence - bringing us meals, and making sure we have everything we need. We look forward to the day that we can once again attend!

Outings? Other than going to appointments with Samuel, I have been out of the house 5 times since getting home over 7 weeks ago. Twice going to the social security office, twice for groceries, and once to vote. But that's more outings than I had in most 7 week stretches over the past 9 months, so it's hard to complain! When we were in the hospital - especially the 5 months we spent in Delaware without a vehicle - we rarely left the hospital, other than walking to and from the Ronald McDonald House in the morning and at night. In the 7+ weeks that we were back at ACH, after transferring back from Delaware, I only walked out the hospital doors 3 times...All that to say, we are pretty used to it by now! I try to make it a point to get the mail out of the mailbox every day before Seth gets home, because otherwise I usually don't even get the chance to step outside of the house. But, of course, I can only walk out to the mailbox if someone else is in the house with Samuel to respond to his alarms.
Seth and I have not yet had the chance to get out of the house together, other than when we have taken Samuel to his appointments - which is not exactly a leisurely activity, and doesn't allow for any side trips. But Samuel could only be left with someone who has been thoroughly trained in all of the emergency situations for a baby with a trach, and even most nurses haven't dealt with trachs. Anything can happen at any time...

Is it hard? Yes. But we know that it is only for a season.
Sometimes seasons seem like they will last forever when you are in the midst of them. It can be hard to see the light at the end of the tunnel. But, looking back over the last long season of hospital stays, it already seems like so long ago! And we know that the same will be true for this season! By the time next spring rolls around, and we are able to come out of hibernation a bit more, we will look back and be amazed at how far in the past that hard season already seems.

"For everything there is a season, and a time for every matter under heaven" ~ Ecclesiastes 3:1

God is the one who ordains each of the seasons of life. Who are we to say when they should begin or end? What right do we have to question which seasons we should have to walk through? As the name of our blog clearly states, we know that God is the one authoring this story - it is His story. We are simply the ones journeying along the path He has laid out. And we are the ones who must decide how we will respond to each season. Will we respond with joy, despite difficult circumstances? Or will we whine and complain about how these hard seasons aren't fair? Only one of these choices will bring God the most glory.

Let me encourage you to find joy in ALL things.

Just like Samuel David!

Samuel reminds us every day that, you may not be able to change your circumstances, but you can choose to change your attitude!
We pray every day that God will continue to fill our our sweet boy with joy 💙


Prayer Requests:

• Pray that Samuel will continue to remain healthy all through these winter months! The past 2 weeks Seth and I have been battling sickness ourselves, but fortunately not at the same time. If you wake up with even the slightest hint of sniffles, then its a mask day for you and no touching Samuel - which is unbelievably hard...This puts a large workload on the other person, with drawing up and giving meds, respiratory treatments, suctioning, maintenance of his equipment, washing his daily supplies, responding to alarms, prepping his feeds, diaper duty, and keeping him entertained.
• Pray that God will grant us the necessary strength and endurance to get through this critical time for Samuel. Right now he has to have eyes on him at all times, 24/7, which is exhausting. We are thankful to have some home nursing help, but there are a couple nights a week where we do not have a nurse and have to take shifts staying awake to sit by Samuel's bedside.
• Pray that we will have wisdom as we care for Samuel. We had one scary event since being home, where Samuel's sats dropped really low and he was turning blue. We had to go through our entire list of emergency procedures before Samuel finally responded, and we almost had to call an ambulance. He had to stay on oxygen for 24 hours, and his doctors assumed this was just the beginning of him getting sick. But 24 hours later we were finally successful in weaning him back off oxygen, and his viral panel was negative! He has been doing great ever since!
• Pray that we will have wisdom and discernment as we communicate with doctors and try to find the right ones for Samuel's care. The fact that we have 3 different locations spread out across the country where we are having to try to get doctors to collaborate just complicates things. There are days where I think it would be easier to move back to Delaware until Samuel is more stable...we're hoping that doesn't have to happen. But right now we are still searching for doctors that are willing to collaborate with the specialized team in Delaware, and it has been stressful.
• Samuel is having a lot of GI concerns. His electrolytes are still dropping lower, requiring increasing amounts of supplements, his stools are abnormal, he struggles with reflux, and he has a lot of gas that we have to vent out of his stomach multiple times a day. We don't know which of these things might be due to the fact that part of his intestines were removed, and we still have not been able to see a GI doctor since being home. Please pray that we will be able to get Samuel in to see GI soon, and that they will be able to figure out these issues. For now, I went off dairy not long after getting home to see if that would help. But so far it doesn't seem to have improved much.

Praises:

• Samuel has remained healthy!
• We have been home for over 7 weeks without being readmitted!
• God has provided a few wonderful home health nurses that help to take away some of the craziness from our plate!
• Although Samuel is still very much dependent on the ventilator, we see some signs that his lungs are definitely improving!
• Samuel has been thriving since coming home! The last 2 months in the hospital his weight had pretty much stayed the same, but since coming home he has gained just over a pound in the last 7 weeks! Which may not sound like a lot, but for him that's huge! As of last night, Samuel is now 13 pounds, 12 ounces!
• Samuel is also thriving in development! He is so curious and loves when we walk him around the house. We are thankful we have a cart to hold all of his equipment so we can more easily move him! His head control and sitting have improved so much, and he is close to sitting unassisted! He has a tooth that just started poking through in the last couple of days. He is tolerating tummy time a little bit more...although that is still a struggle. And he has started figuring out some mouth noises! Which is so fun to hear him make some noises, even though we can't hear his voice.

This is His Story, and it is all for His glory!

Homeward Bound!

Aannnd....we're off!
It has been raining all day, and Seth is following behind us in his truck. Please pray that we will all have a safe journey home! It is a 3-hour drive.
Samuel has been doing well so far!

TODAY is the day!!!

We're just about as excited for today as we are for when daddy makes noise with a plastic bottle! And that's pretty excited!

As of now, the plan is still to leave here in an ambulance around 11! However, since it is a non-emergency transport that time could be pushed back if the ambulance is called out for another emergency.
There are also a few things that still have to happen this morning before we can leave. And if Samuel does anything out of the ordinary this morning discharge could still be postponed.
All of that to say...we are trusting in God's perfect timing! And trying not to stress!

I will try to keep y'all updated throughout the day. They will likely be short and sweet!

Please pray:
•For all of the pieces to fall into place this morning.
•For Samuel to do well for transport, with no emergencies.
•For Samuel to continue to remain free of any infections and viruses.
•For Samuel to adjust well to being home!
•For Seth and I as we make this big transition.

Today is NOT the Day...But That's OK!

Today is October 8th - the day we could have been going home.

But we're not, and that's OK!

Discharge has been pushed off a week, and is tentatively (it's always tentative!) scheduled for the 15th now. We just need a bit more time here to figure out the balance of diuretics and electrolytes. Samuel's body is showing that it needs high doses of diuretics, but giving those high doses makes his body get rid of electrolytes - mainly sodium and potassium. Those levels have remained low for a while now despite significant increases in the supplements that he is getting. If his diuretics are weaned then he has increased work of breathing and his sats drop, but if his diuretics are increased his electrolytes suffer even more. So it's been a non-stop balancing act that we still haven't quite figured out.

But truthfully? It didn't even faze us when we were presented with the idea of staying another week. What's one more week after 8 months away from home? We know that God had this in the plan all along. We know there must be some reason we are here for an additional week.
If nothing else, we have learned along this journey that God's timing is always perfect! Even when we can't see it in the moment, we have been shown over and over again that each moment, each decision, each holdup - they all have a purpose.

Remember back at the beginning of June when Samuel had surgery to get his trach and central port? We were supposed to be sent back to Arkansas Children's Hospital 2 weeks later! We were SO excited! But then Samuel started getting persistent mystery fevers. And we had some of the hardest days...We still don't know the cause of those fevers. But what we do know? What we do know is that without those fevers we would have been on a plane back to ACH before the end of June. Without those fevers we would have been gone from Delaware before anyone realized just how bad Samuel's GI issues were, and that he had been misdiagnosed with a pseudo obstruction. Without those fevers we would have been sent back with Samuel still on TPN, unable to eat, and an obstruction in his intestines that no one knew existed!
It was only because of those fevers that our timeline was pushed back, and because of that the GI surgeon was able to offer us another last-ditch surgery to relieve some pressure from his ever-growing belly. But instead of just relieving pressure, he found the one thing that everyone said wasn't there! And here we are 3 months later and Samuel is being fed milk through his g-tube! Not only that, but if they hadn't found the obstruction at that time? Possibly if it had been even a few more days...Samuel's intestines could have easily ruptured, and then this would really be a different story.

The point is that we never know what is best. Only God does. We have seen that over and over again, so we will continue to trust in Him. We are not about to let another week of hospital life get us down!

My first time wearing Samuel! I think you can tell that we both enjoyed it!

Child life bought by an exersaucer for Samuel to try out! With a few modifications, he enjoyed being able to sit up and play with some new toys!

Prayer Requests:

• Pray for Samuel's fluid balance to remain stable. They did an x-ray today and his lungs are looking very clear! Which is great.
• Pray that Samuel's electrolytes will stay in a good range.
• Pray that the doctors can figure out why Samuel's body is requiring such high doses of multiple diuretics. The current state of his heart requires diuretics, but not this much. It is reasonable that he also needs some diuretics due to the state of his lungs, but (again) not this much. And while babies with EVC do often require more diuretics than most other babies with cardiac or pulmonary issues, the amount Samuel is on is even higher than what would be expected by that reasoning. Maybe it's the combination of those 3 things? Or maybe there's something else that we're missing...please pray that if something is being missed - if there is another cardiac or pulmonary issue that hasn't been diagnosed - that God will reveal it this week!
• Samuel will be having another echo on Wednesday, but this time they are going to sedate him. They are trying to get very clear pictures of certain parts of his heart that are often difficult to see on babies with trachs. The reason they are wanting this is to make sure there are no other complications that they are missing - any other reason that he might be requiring so many diuretics. Please pray that Samuel does well for this, and that they are able to see everything that they need to.
• Pray that Samuel will continue to remain healthy! No viruses or infections!
• Pray that God will continue to prepare our way home! Especially pray for God to hand pick the perfect home nurses for Samuel - that they will be loving, trustworthy, and skilled.

Praises!

• We are closer to going home than ever before!
• Today was the first day in several weeks that Samuel's sodium and potassium have both been within the normal range!
• After almost 2 months of no growth, Samuel is starting to gain some weight! He is currently 12 pounds, 9 ounces!
• Samuel is tolerating longer periods of time in his car seat! He requires a LOT of distraction, but I think we will be able to make it work for the 3-hour ambulance ride!
• From the pictures you can see that we tried a few new things over the past week, and Samuel enjoyed each one!

This is His story, and it is all for His glory!

D-Day is Approaching!!!

I promise I am not trying to only do monthly updates, but this past month has kept us busy! Maybe some time I will try to do a post on what a day-in-the-life looks like here, so y'all can see how full our days are. I have so few long stretches of time where I can sit down and write a post, so I have written a lot of unfinished ones over the last month. But I want to keep y'all updated because there have been a lot of exciting things that have happened! There are also still many prayer requests, and we have so appreciated having each of y'all on this journey with us knowing that y'all are lifting us up before the throne of God.

But before I tell you about the SUPER exciting news...here is a picture/video summary of some other exciting things that happened over the past month!

September 1st

Samuel had his first really big belly laugh! It was such a special moment seeing him shake with joy! After a few minutes I began to cry. Tears of joy for seeing my baby laugh, but also tears of longing as I desperately wish we could hear his sweet laugh.

September 3rd

Samuel had his first babysitters! My sister and a sweet friend of ours from church (both of whom are nurses!) drove down to see us and let Seth and I go out on our first date away from the hospital in a long time! We were so thankful for the time to step away while knowing Samuel was in good hands!

September 4th

Samuel successfully transitioned back to the home ventilator! We are SO thankful that they put him on it for the last 3 days in Delaware, because when they transitioned him here Samuel actually failed within the first 10 minutes. BUT because he had successfully been on the home ventilator in Delaware, we were able to tell them 3 specific things that had been different at the other hospital. After a couple of hours of gathering the right supplies, they tried Samuel on the home ventilator again and he has been on it ever since! Yet again, God's hand at work!

September 5th

We were given a new book today by some dear friends who came to visit! It is such a good book for kids over-viewing creation, the fall, sin, and God's plan of redemption!

Samuel loves to look at books as we read to him!

September 6th

Today we moved out of the CVICU, down to a non-ICU floor! This is Samuel's first time EVER to not be in an Intensive Care Unit! He spent the first month of his life in the NICU at ACH, then the next 5 months in the CICU (cardiac ICU) in Delaware, and was then transferred back to the CVICU (cardiovascular ICU) here at ACH. It was so strange for us to be in a room with fewer monitors and beeping! But now that we are here we officially begin our transition home!

September 8th

Today Samuel really began interacting with his tongue! His favorite game for about a week was sticking out his tongue and smiling, especially when he would see someone else's tongue! He thinks tongues are pretty funny!

September 11th

Today we put Samuel in his carseat for the first time ever! He has to start preparing for the 3-hour ride HOME!

September 13th

Samuel went on his very first stroller ride! We got to take him outside, and he was all smiles!

September 16th

Samuel found a new favorite game of cracking himself up with his own serious face! He had us laughing so hard!

September 19th

Samuel did tummy time on a ball today and tolerated it for 5 whole minutes! This is a big deal for Samuel! Because of all the surgery's he has had on his belly/chest area, his front side is very sensitive so he has never tolerated tummy time. He wasn't even able to do tummy time much until just the past couple of months. It took distracting him with live music, but he showed great improvement!

22 September

We have been waiting for ophthalmology to see Samuel for a couple of months now, but apparently it is very hard to convince them to see someone who is inpatient. We are thankful they were able to do an exam for him, and we are now patching his strong eye for 2 hours every day. Although he is not the biggest fan, he has been a trooper, and we have already seen improvements!

25 September

This morning Samuel had an MRI of his brain because there has been some concern that he has more fluid on his brain than usual. The MRI confirmed this. However, as of right now it is not causing too much pressure, and Samuel is not showing any signs of it effecting him. So it is something we will just have to keep a close eye on. Samuel did so well for the MRI in the morning that he was still able to go on his scheduled stroller outing that afternoon. Several of my family members drove down to join us - including Samuel's grandparents, a couple of aunts, and 3 cute cousins! His cousin Amelia, in particular, has been anxiously waiting months to finally meet "baby Samuel" (who she so sweetly remembers to pray for daily!) and she was so excited to hold him!

27 September

Samuel is 7 months old!

October 1st

Samuel LOVES his music therapy! Music helps get him through some of the hard things that he has to do daily.

Those are just a few brief highlights...

But now onto the SUPER exciting NEWS!

We have been back at Arkansas Children's Hospital (ACH) for almost 6 weeks now, and D-day is being discussed as a reality!

Discharge day!!!

Instead of simply talking about it as some future event down the road discharge now has more of a timeline, and....are you ready for this??

It may be less than ONE WEEK AWAY!

Could it change? Absolutely. In fact, many would probably expect it to change, especially considering Samuel's many complicating factors. It is dependent on Samuel remaining stable, not getting sick, ensuring that his electrolytes stay in a good range, and passing his 3-hour car seat test. All of our medical equipment and supplies also have to be delivered in time, and there can't be any hiccups with insurance. All that to say, we are simply not letting our hopes get too high (something we have become very accustomed to doing), yet at the same time living expectantly and preparing as if it were happening any day!

Lord willing - if all stays on track - we may be taking Samuel HOME with us for the first time ever in six days - October 8th.

October 8th of last year was the day we would have been welcoming our first baby - Penuel - into this world. But God had other plans.
Last year I dreaded the arrival of October 8th. Last year that date was full of tears...
This year? This year October 8th is once again a much-anticipated date! This year we are hoping that October 8th is the day we get to stop living in hospitals for the first time in over 8 months, and take our precious son HOME with us! God is once again redeeming a painful day.

As we prepare to transition home, my family has been working tirelessly to get our house ready so that we haven't had to make the 3-hour trip home, away from Samuel.
Our house that we left spur-of-the-moment over 8 months ago. Our house that didn't have a nursery set up because we still had 10 weeks before Samuel was supposed to arrive and we hadn't had any of our baby showers yet. Our house that now needs to be sanitized, set up, and prepped for a medically complex child to live in!

Many of y'all over the course of this journey have asked ways you can practically help, and there hasn't really been a lot for people to do long-distance. But, for those who have been anxious to help, we do have baby registries set up on Amazon.com and Walmart.com with some of the many supplies we still need to get. We need lots of the typical baby stuff like crib sheets and baby soap, but we will also need many non-traditional things for Samuel - like pipe cleaners to clean his trachs, bins to keep in the refrigerator to organize his meds and his milk that he is fed continuously, and hand sanitizer to protect our medically complex son from a cold that could be life-threatening to him. We are slowly gathering all of the things we will need to properly care for Samuel, and it makes it feel more real that we may actually get to bring him home with us!

But, while we can't wait to go home, we also don't want to rush out of here if Samuel is not ready. Please pray with us that it will happen in God's perfect timing!

Prayer Requests:

• Pray that the fluid on Samuel's brain will not increase, and that it will not cause him any issues!
• When we arrived back at ACH they started weaning Samuel from some of his diuretics. After a couple weeks, it started catching up to Samuel and he began to struggle with breathing and keeping his sats up. They have slowly been going back up on his diuretics, but now Samuel is not responding as well to them as he used to. Please pray that they will be able to figure out the perfect doses for Samuel, and that his body will be able to get rid of all the fluid it needs to.
• Along with the diuretics, Samuel has also been struggling with low sodium and potassium levels, so they keep having to increase his supplements. Part of this is due to the diuretics he is on, but it may also be due to the fact that part of his intestines have been taken out so there is not as much real estate to absorb all of the nutrients he needs. Please pray that he will be able to maintain these levels in a good range.
• Pray that insurance all works out so that we can take Samuel home and be provided with the nursing coverage that we need, especially at night so we can sleep!
• Pray that our home nurses will be trustworthy, loving, and skilled so they can help us take care of Samuel well!
• Pray that Samuel will do well in his car seat for the 3-hour ambulance ride home!
• Pray that all sickness stays far away from Samuel!

Things we're thankful for?

• We are close to going home! Although it may not happen next week, we are just excited to have a discharge date because that's the closest to home we've ever been!
• Samuel's joy continues to shine through even on the toughest days!
• God's grace that has gotten us through each moment!
• Our family in NWA who are helping make it possible for us to come home!
• All of you who are praying for us and supporting us in so many ways!

This is His story, and it is ALL for His glory!

So Close, But Still Further to Go!

We have now been back at Arkansas Children's Hospital for a little over a week!  And the fact that I have failed to update until now might clue you in to what kind of week it has been.

This face just about sums up our week!

The good, the hard, the surreal.

First of all, Samuel did so well during transport!  He slept for a majority of the flight and two ambulance rides, after only one small dose of extra sedation.  A world of difference from when he was transported up to Delaware in March!

Since being at ACH, Samuel has already made some progress!  He is now completely off of another sedation med, leaving him with just one more!  He has also handled some major weans on his ventilator settings for the first time since April!  They took him off of the home ventilator when he got here, just because they have a different method of doing things.  But hopefully Samuel will continue handling some vent changes throughout the coming week, and will be put back on the home ventilator within the next few weeks.  One step at a time!

Other exciting news?  We have an actual room!  A room with no other patients.  A room that has doors.  A room that we can sleep in with Samuel!  Six months of staying by his bedside from early in the morning to late at night, every single day.  Six months of having the heart-breaking task of saying "goodbye" every night, not being allowed to sleep by his bedside.  Now, after six months, we finally get to wake up to Samuel's wiggles and alarm sounds in the middle of the night!  While many parents of young children are desperate to get a good night of sleep, Seth and I have been dreaming of this night!

While there has been progress made, it's still possible that we are months away from going home.  We hope that it's sooner than that, but we've been told to not get our hopes up.  They don't get in a hurry when it comes to discharging children who have trachs.  There is in-depth training that has to be completed (a lot of which we did in Delaware!), medical equipment that has to be acquired for home, insurance to deal with for setting up monthly medical supply deliveries, mandatory home nursing slots that must be filled...we have to find a pediatrician, cardiologist, pulmonologist, GI specialist, nutritionist, therapy services, and a DME company close to home.  Lots to do, and it all takes time.  So as we wait, we will continue to see how much Samuel's lungs can be challenged.  So far he's taken some good strides, and we think he's up for the challenge!  God continues to give him strength!

But we are exhausted.  Mentally.  Emotionally.  Physically.  This has been a hard 10 days.  We have often been the communication bridge between the doctors who have been working with Samuel for the past 5 months, and the doctors on our new medical team in Arkansas.  We are on high alert for changes they want to make that we know are not best for Samuel's condition or for babies with EVC in general.  Because we know him best.  We are the only ones who have been with him every day of his life.  We have seen how he has responded to every single change, good and bad.  We know what's worked in the past.  We know his little quirks that may not make sense medically.  We are his greatest advocates.  And that's hard.  It's exhausting.  But seeing Samuel make progress makes it all worth it!  Thankfully, some of the doctors here have helped in the communication with our team from Delaware.  We are so thankful that they are willing to collaborate!  And we are confident that this arrangement will continue allowing Samuel to get the best care possible.

It was very surreal coming back to ACH after 5 months.  As soon as we entered the hospital it was like we had never left.  These hallways are all too familiar.  But at the same time everything was so new and different.  We're in a different unit this time, with a new medical team, and new ways of doing things.  Now that we are back here, our time in Delaware already seems so long ago!  But while we were there it felt like we had been there for well over 5 months.  Needless to say, time is a funny thing!  But we are thankful that we are only 3 hours from home now, instead of half a country away.

Another exciting thing since arriving here is that a sweet friend of ours surprised us by designing a shirt for Samuel!  We are so excited to have a shirt to wear that will be a conversation starter to point others to the glory of God!  These shirts will also help to offset medical expenses and our day-to-day costs of living away from home.  If you would like to buy a shirt you can click on this link!

https://www.customink.com/fundraising/samuel-strong-shirts

I think you can only buy them through the end of this weekend, so don't delay if you would like to have one!

I cannot express in words how much each of y'all's prayers mean to us.  We know God hears each one, and He has continually provided us with strength along this journey!

Prayer Requests:

• Pray that Samuel's lungs would do well as they are challenged in new ways!
• Pray that the medical team here will have wisdom to know when to switch Samuel back to a home vent.
• Pray that collaboration between doctors will continue so that Samuel gets the specialized care that he needs.
• Pray that the peices for us to go home will all begin to fall into place.
• Pray that God will grant us all strength and rest.

Praises:

• Transport went just about as flawless as possible!
• We are now able to room-in with Samuel!
• Samuel has already made progress since being back at ACH!
• Samuel turned 6 months on Monday!  We are so thankful for these past 6 months!

This is His story, and it is all for His glory!

Arkansas Bound!!!

Samuel David - caught daydreaming....

Daydreaming about going back to his beautiful home state of Arkansas. Daydreaming about the day he finally gets out of an Intensive Care Unit. Daydreaming about the day he can live life out of a hospital for the first time. Daydreaming about the day he can finally go HOME!

Lord willing, one of those dreams will become reality TODAY!!! Just 6 days short of spending 5 months at A.I. Dupont Hospital for Children in Delaware, the plan is to transport Samuel back to Arkansas Children's Hospital today! We will still be 3 hours away from home, but that's so much closer than half a country!

Praise God that insurance finally approved the transfer after several denials!

Prayer Requests:
1. Pray that Samuel does exceptionally well being transported! It would be awesome if they allow me to comfort him during the trip.
2. Seth has to fly separately out of Philly because the transport team can only take one of us. Pray for us as we are apart for a large part of the day, and for safe travels for us all!
3. Pray for Seth and I as we transition to a new hospital with new doctors, nurses, policies, ways of doing things...new everything!
4. Pray that if this transport isn't supposed to happen today that God will make that clear SOON!
5. Pray that God will give wisdom to the new medical team that will be caring for Samuel.
6. Pray that God will work in ALL of the details, and that He will receive glory through this journey!

Thank y'all for praying!
Arkansas, here we come!

This is His story, and it is all for his glory!

God Works in the Waiting

This photo is answered prayer.  This photo causes us over and over again to raise up our voices in thanksgiving to our gracious Creator.  This photo is so sweet to see!
Because in this photo we are reminded yet again that God is in control - He is in every detail.  God so carefully ordains the timing of everything.  Even though we may never quite understand in our lifetime why a certain thing happened at a specific time, we can trust that God's reasoning far surpasses our limited knowledge.

The "standby" screen in the picture above?  That's the screen on the hospital-grade ventilator that Samuel has been on since birth.  The blue unit with it's screen lit up?  That's a HOME ventilator.  Yes, H-O-M-E.  That's a type of ventilator that Samuel could actually leave the hospital with.  It's not as powerful as the "cadillac" hospital version, so it's not uncommon for the transition to take lots of time and many failed attempts.

On Friday they had tried to transition Samuel to the home vent, but he had failed in less than a minute - which is quite unusual to fail so quickly.  So when Monday rolled around, inquiring minds were baffled by the fact that Samuel hadn't seemed to handle the switch even for a moment.  So they decided they would try again.
But when they turned on the unit to match the settings?  The settings from Friday's attempt were still programmed in, and they realized a LARGE mistake had been made which caused Samuel to receive MUCH less support than he was used to getting.  No wonder he seemed like he was drowning so quickly!

Let me tell you that, at this point, it would have been easy to point fingers and get upset about a mistake made.  But to be honest?  That didn't even cross my mind.  What ran through my mind immediately (and I'm pretty sure came out of my mouth too) was praise and thanksgiving!  Mistakes?  Those happen.  Samuel wasn't any the worse off for it.  Sure, we had spent the weekend somewhat discouraged, and we were worried about the upcoming transport which would also require Samuel to be on a less powerful vent, but we continued to trust God to work in ALL of the details.  There must have been a reason for Samuel to not transition before the weekend - even if it was just God teaching us the lesson of trust, yet again!

When they transitioned Samuel on Monday?  After putting in the correct settings?  He hardly noticed!  Not only that, but lots of times when transitioning to a home vent they have to go up on the settings some to try to actually match the support that the more powerful ventilator was giving.  But they didn't have to bump Samuel up on any of his settings!  Within 30 minutes he was sound asleep - the only difference being a higher than his "normal" respiratory rate.
Today?  Two days later?  Samuel is STILL on the HOME ventilator, and seems to be doing even better than when he first got on it.

ALSO on Monday, we were told that we would be flying out of here on Wednesday at 11!  We were ecstatic and nervous all at the same time, but mostly just excited to get back to our home state!
But that was all pending insurance...which yesterday ended up denying the initial request for transport.  So today the wonderful team here is working through some extra steps to appeal the insurance and try to get us back to Arkansas Children's Hospital.  We are so grateful for the countless hours they are putting in to try to make this happen! Because of this, we will likely not be leaving today, but it could still be by the end of this week if insurance approves of the transport.

We are trusting that God has a reason for this delay!  We are trusting that His timing will be perfect!  So we are not despairing today that we aren't on a plane...we are instead choosing to rejoice that Samuel has more time to strengthen first!  We are looking at this as an opportunity for the team here to have more time to tie up loose ends!  Besides, we've been waiting in Delaware for almost 5 months now, so what's a while longer?

And Samuel doesn't seem to mind all of the waiting, as long as he is getting attention!

But if there's one thing we learned from our transport up here, it's that things can happen at a moment's notice!  So we are all packed and ready to grab our bags at any time, trusting that none of this is a surprise to God.

Prayer Requests

• Please pray with us that insurance will approve the transport, and that it will happen in God's perfect timing.
• Please pray that Samuel will continue to thrive on the home vent.
• Please pray that Samuel's belly girth will regulate, and his intestines will be able to speed up a bit. While he is passing gas and stooling, things seem to just be moving quite slow, and his girth some days is quite large.

Praises!

• Praise God for Samuel's successful transition to the home vent!  This was a necessary step before we would be able to complete all of our training to take him all the way home!  So we are one step closer.
• Praise God for working in all of the details!
• Praise God for such a hard-working team of people up here who are working to get us back to Arkansas!

This Could Be the Week!

That's right, this could be the week that we get back to Arkansas!

Listening closely to the good news!

Samuel is pretty excited to be going back to his home state!

Based on Samuel's echocardiogram last week, the doctors were all in agreement when they met last Thursday.  Samuel's heart is functioning well for now, and shouldn't need any interventions for at least several more months.  Because of that, they see no reason to keep us in Delaware, and they have already initiated the transfer process back to Arkansas Children's Hospital!  This can take quite some time to jump through all the right hoops.  But, as we know all too well from our transport up here, some times it can happen much quicker than anticipated!  So we spent the weekend making sure we have everything packed up, just in case!

It still feels surreal that after almost 5 months we may finally be heading back to Arkansas!  We will still be 3 hours away from HOME when we are transferred back, but it will feel so much more like home than Delaware.  However, we are so grateful for our time here! We are thankful that God led us to the DuPont Hospital for Children when He did.  Otherwise Samuel might not still be here with us.

Along with our excitement, there is also fear and anxiety fighting to creep in.  As we found out back in March, different hospitals function so differently.  They use different equipment, different techniques, and they don't know Samuel.  They won't know what Samuel's "normals" are.  They won't know what Samuel likes and dislikes.  So Seth and I will have to boldly advocate extra hard for Samuel over the next few weeks.  We are praying for boldness and wisdom, as well as discernment to know when a change might be a good thing.  We are also asking God to fill us with peace, so that fear and anxiety have no room to dwell here.

So the adventure continues!  Things could always change, as they have before.  We are praying that God will just cause everything to fall through if it's not our time to head back yet.  Otherwise, we're praying for a smooth hospital-to-hospital transition! We will keep y'all posted as we know more.